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There is good news!

Paraplu
Posts: 37
Joined: Feb 2009

Hello everyone,

I've been reading horror stories and I've been reading very positive stories on this and other bulletin boards. I would like to spend a few minutes on the good side of things. I wanted to share a positive story, mine, with all of those who are trying to figure out what to do and are facing surgery soon. Share my experience with those who wonder how bad things can be and if there is really a light at the end of the tunnel.

I am 58 and earlier this year was diagnosed with prostate cancer. My PSA score was only 4.6 at the time, however it was double compared to what it was a year before. Reason enough for my doctor to suggest a biopsy. Good call, as I went through a painless biopsy, 10 core samples were taken and in two of them a small cancer amount was discovered. As I've had my PSA checked every year for the past 5 years, the lesson I learned and am now sharing with everyone is get your annual physical -and- keep track of all your blood work done and scores so you can spot any irregularities. Key here is to catch something early!

Anyway, with a Gleason of 3+3 and a small amount of cancer spotted in the biopsy I was lucky. I got there on time.

I went through the same shock, concerns, questions, feelings that everyone else goes through. It is amazing how many people have this cancer and it is amazing how much is written about it. With so many people walking around with PC there are lots of options now, which doesn't make it easier to make one though. I talked to a friend who used seeds, I read about surgery and radiation and waiting, however my initial feeling of 'just cut it out' stayed with me during my investigations. My doctor, a Kaiser urologist, gave me 2 weeks to do research and I needed those 2 weeks to read and see if I would change my decision.

After research we (Yes my very supportive wife included) decided to stick with my initial decision to cut it out. The next step was to figure out what would be best. There were so many positive comments about the daVinci robotic surgery that my conclusion was that that was the way to go. I checkout out the video at the daVinci web site, I read about it on blogs and bulletin boards, and I felt that this would be my best choice. Next was to find one.

We were with Kaiser and you know Kaiser is an insurance company, so we were ready for anything to fight the system or go outside the system and borrow money to get the daVinci done on our own dime if needed. To my surprise Kaiser in Northern California had a daVinci system in Walnut Creek. My urologist did not have the experience needed so he himself suggested we talk to someone within the system who performs the surgery on a regular basis. Not only does he work the robot, he is also experienced with Open surgery, just in case. Dr. Martinez from San Francisco urology department was extremely helpful and open and took his time to explain everything. We felt good with Dr. Martinez. We talked about the performance of the robot, how many times did it have to be rebooted, what if it get stuck before surgery, what if during, etc etc. My decision was to stick with a surgeon who not only had the experience on the robot but could also take over the 'old fashioned' way if something failed during surgery. My decision was also not to accept open surgery even if I was in the OR and ready to be operated on. Wake me up and bring me back later was what I told them and they accepted that without a problem.

Not of that was needed. Last Friday I got operated on, the Kaiser staff was introduced to me in the OR, I checked out the robot which is a very impressive piece of equipment and under I went. Dr. Martinez is very careful and it took over 5 hours to take care of me. He explained that he removed the vessels as well as the prostate and was able to use nerve sparing techniques on both sides. I went home the following morning after I showed them all that I could walk around on my own. The fear of the catheter was not needed, here I am walking around with a plastic bag and all I can say is: I can drink 24 hours a day and all I have to go is empty the bag every now and then. I drink a lot of water and now I am just waiting to get the catheter removed next week.

The catheter? Not as much of an issue as I expected. I have a large and a small bag. The small bag fits easily around the leg so I can walk and work and enjoy the outdoors. I tried that one but came to the conclusion that with a bit of work I could do the same with the large bag and hold a little more pee in my baggy pants.

So here I am, lucky I understand, but I am walking, back to work part time with my baggy on my leg, enjoying being with my wife who has been very supportive during all my decisions and has done a tremendous amount of work during research and is supporting me now to feel Ok with all of this. On top of that, and this part is maybe hard to believe, I have had 2 erection already! This doc did an amazing job I can tell you. A bit difficult to have an erection with a catheter coming out of your penis, but 5 days after surgery having surgery, it could happen to you!

So, again, yes I am lucky and with a bit of luck removing the catheter will be less painful or uncomfortable as I expect it to be, but look at it from the bright side. Things worked out and now the thing is gone I most likely won't have to deal with it anymore. I'll get my PSA test in May, that will be the next hurdle, but I am comfortable and optimistic that this will work out also. I'm 'only' 58 and will be able to pee like a young man for the rest of my life.

Stay positive! Good luck to everyone and talk to people, not just the ones with bad stories but also the good ones. Peace to everyone.

Theo

Paraplu
Posts: 37
Joined: Feb 2009

My doctor called me earlier, yes he was on vacation but took the time to give me the good news, the pathology report (which is in the mail for me to read in greater detail) told me that there was only 5% cancer found, Gleason is still 3+3 and there is no cancer to be found in the areas where he cut out the prostate.

So, tell everyone to get their annual physicals and keep track of the results. Try to get there early, stay positive and ask questions. Ask people who went through this, they can give you the best information and tell you why they picked a certain option. Ask your doctor and ask another doctor if the answer does not help or if you are not getting the information you need. Ask the hospital staff, ask, ask, ask.

Theo

acslife
Posts: 12
Joined: Dec 2008

Happy to hear your results. Yes, there is good news out there. Had mine in July, '07 and four PSA results yielded a .01 reading. Hopefully, your incontinence will be temporary. I wore a pad for 7 months and haven't used any since. (There are some occasional trickels, however). Try Walgreens' jock style pad. It's much more comfortable, like wearing a brief. Erections could be somewhat problematic, but with patience and a good partner, you could overcome major hurdles. At this stage, I don't expect resumption to presurgery levels.
Best wishes, you're on your way to a healthier and happier life.

Paraplu
Posts: 37
Joined: Feb 2009

Thanks and all the best to you too. It's been a trip so far but there is life after a prostatectomy I'm sure.

hopeful and opt...
Posts: 1293
Joined: Apr 2009

I wonder, after you came home........did you need extra care....things that you could not handle yourself?

Paraplu
Posts: 37
Joined: Feb 2009

Hi,

I am fortunate enough to have a very supportive wife, however as soon as I find that she wants to do things I started to do them myself. First day home for instance I was tired in bed for a nice long nap, she felt we needed to empty the plastic bag of urine so I let her do it once and since then I take care of this myself. It was just one more thing to keep an eye on. Same for replacing my bandages, get my pain pills, etc etc

I am very independent and I think it is the only way. Looking back, and it's only been a week now since surgery, there is nothing I could not do on my own. I live on a 3rd floor walk-up so the stairs were a bit slow the first couple of days, but easy does it.

I walked 2 1/2 miles on my 6th day out of the hospital. And during long walks my wife will be with me just in case. She keeps an eye on my on how I feel so I won't overdo it. However on short walks to the post office for instance, I go alone. I try not to overdo it, but I feel I can do anything.

Let me know how you're doing. Are you scheduled for surgery?

Theo

hopeful and opt...
Posts: 1293
Joined: Apr 2009

I was diagnosed last month, March 09, all my scores are low psa 2.2, gleason 3+3, 2 of 12 cores positive at .05. I'm 66, in excellent health. I thought that robotic surgery was the best way to go. Last week, I saw a robotic surgeon at UCLA. He did not discuss surgery, but told me that my cancer is indolent, not likely to grow, and wants to do "active surveillance" At UCLA, they watch pretty close, quarterly psa, annual biopsy and MRI and MRS spectroscopy to improve accuracy of the MRI. I am taking the mri and mrs on Thursday so I will know where I stand, and I can continue with "active surveillance" or get the surgery.

I asked you about the care question because I live by myself. I have family in other parts of the country, and a very close lady , who is also a nurse who also lives in another part of the country. They will come if I ask, but I would prefer to handle it without bothering them if I can. I really don't know what I need to do, or if they do come how long they need to stay.

I can also do the surgery in NYC where I have family to support with after care if that is something that I need to do.

Anyway, that's where I'm coming from.

Ira

Paraplu
Posts: 37
Joined: Feb 2009

Hi Ira,

I see where you are coming from. I may be the 'poster boy' for this operating as my doctor calls me, and as such everything worked out just fine for me. I am 58, in very good health, great weight, take one step at a time, and as such all worked out for me.

I am lucky, that if I needed help she is right here, however I did not. I can do anything myself, have from day one, however you need to realize that no matter what you are dealing with a 4 - 6 hour operation and you won't feel very good after that. I've had back surgery a few years ago and did very well there also. No two people are the same and I am wondering if 'just in case' you would be better of to get some level of help in the first 2 days at home. If you go to the NYC you would have to get back home after a while and it is a long trip home.

Can you plan ahead and stay home for a while because once you are home the first couple of days it is careful walking, avoid the stairs maybe for a day or so. Is there a neighborhood community center where maybe they have someone who can check on you once in a while, or someone you can call if needed?

As for 'watchful waiting' ... there are no guarantees that it won't grow. If there actually is cancer, why wait? Wait for what to happen? And, you are in better shape now than you will be 2 years from now.

Good luck and stay in touch
Theo

whubbs
Posts: 77
Joined: Sep 2008

Ira,
Sorry to hear of your diagnosis.
My numbers were very close to yours, PSA 2.7, Gleason 3+3 and 3 of 12 cores positive.
.05 seems pretty low, is that suggesting 5% core?
Active surveillance is certainly a viable option for low numbers like yours.
However, mine were not far from yours and my doctors (Ash Tewari at NYC Presbyterian and my local Urologist) both suggested robotic. They cited my age (42) and the low scores.
If you chose Robotic, and NYC is an option for you, I suggest you look in to Dr. Ash Tewari.
He is an amazing surgeon and has pioneered nerve sparing techniques, him and his team of doctors are actively progressing the technology of nerve sparing using the DaVinci robot.
My outcome has been a good one so far thanks to Dr. Tewari's efforts.
See mine http://csn.cancer.org/node/163769
Good luck and be sure to email me any personal questions you might have.
-WH

hopeful and opt...
Posts: 1293
Joined: Apr 2009

Two of my cores were positive, and in each less than 5 percent. I am 66, my birthday present.

I heard of Ash Tewari at Columbia Presbyterian. I saw a video of him in the March 17, New York Times. Thanks for the recommendation.

On Thursday, I am having a MRI and a MRS, so a decision may be made for me to have the robotic.

Currently I am thinking of Active Surveilance, but in all honesty I hear from most to get it over with and do the surgery. I am formulating some questions to ask my doc, ie. What would my numbers have to be in order to have the surgery?, etc.

Thank you for the invitation to email you.

I haven't looked at http://csn.cancer.org/node/163769 yet, but I will respond with an appropriate comment if needed.

Ira

marteau
Posts: 27
Joined: Feb 2009

you will definitely need someone with you or very close to you that you can contact on a short notice. it could be the need to take a pain killer to alleviate the dreaded bladder spasms, a drink of water, in some cases a trip to the emergency room---all of which i experienced. you are not supposed to drive while the catheter is still in--in fact, it might be illegal. it is certainly not advised. The first week have someone available if not living in your same dwelling.

hopeful and opt...
Posts: 1293
Joined: Apr 2009

when, and if the time comes.

hopeful and opt...
Posts: 1293
Joined: Apr 2009

So I need care for two days after the surgery, I live one flight up, so walking up and down stairs will be a challenge at first. I wonder, when will I be able to drive my car? Do I have to make arrangements to drive up to see the doctor after a week. Its 35 miles away.

Do you know anything about kegels; does one need to see a physical therapist to learn how to do them?

By the way, I'm also in a normal weight range, and exercise a lot, mostly cardio.

Ira

John_66
Posts: 10
Joined: Apr 2009

Your doc should have told you about these exercises that build pelvic base muscle strength AND SHOULD BE SCOLDED FOR NOT DOING SO.

From: p. 138; "Surviving Prostate Cancer" E. Fuller Torrey, M.D. ( Yale University Press - 2006)
" Imagine that you are standing on top of a hill, naked, with a $1,000 bill tucked between the cheeks of your bottocks. You are not able to use your hands, but need to hold on to the bill during high gusty winds. That squeezing of your buttocks, pulling up internally and tightening down with your pelvic muscles is a Kegel exercise/"

A woman taught me do do them. She recommended being on hands and knees to aid in concentration of effort. She also told me that she learned them in her girls phys-ed class at high school. Look Kegels up on the web.

Forewarned, I started doing them about 2 months before my op. Would do them on hands and knees holding each squeeze for about 10 seconds - started at 5 times, twice a day and built up to thirty-five reps two sets per day. I think it helped, but only dribble occasionally, wearing no pads on day 5 after my surgery. Of course, it helps having a good surgeon who doesn't cut or otherwise traumatize the lower sphincter muscles.

At any rate, doing them is a way of contributing to your own improvement rather than sitting back and letting things take their course.

hopeful and opt...
Posts: 1293
Joined: Apr 2009

The first thing tomorrow morning, I'm heading to the bank, and getting a 1,000 dollar bill. There aren't very many hills here in So CA., but I can stand in the back of a truck zipping along on the freeway.

I'm very interested in contributing to my own improvement, rather than just sitting back.

Thank you,

Ira

Paraplu
Posts: 37
Joined: Feb 2009

Hi,

I was out of it the first day home, in bed most of the time napping and a couple of rounds hunched over, around the house. The second day was much better but you will have pain in the abdomen so you'll have to deal with that. It impacts your walking around. But keep on walking, maybe take a nap in the afternoon but keep on getting up as much as you can.

They told me I could not drive the first week, part of it I'm sure is because of the meds. However after a few days, and as I'm doing less painkillers every day I think it's Ok to drive after a week.

As for Kegels, do them as much as you can before the surgery. I'll find out Friday when the catheter comes out how I'm doing with incontinence. Anyway, do a search on kegel exercises for men and you'll see it's easy. No need to see anyone about those. Go to the bathroom and pee and in the middle of the stream try to stop that peeing. Now there's your kegel exercise and you can do them while sitting, driving or whenever. Use the muscles to close the 'tubes' so to speak.

All the best

hopeful and opt...
Posts: 1293
Joined: Apr 2009

on with you, I really think that you will do great.

Thank you for the post surgery information. I find it to be very useful. Also thanks for the information about kegels.

Thanks,
Ira

daveatllrc
Posts: 1
Joined: May 2009

Just want to say that reading that Kaiser has a good person locally makes things a little easier. I'm 63 and I was just told last Friday and am still a little shocked by it. My Gleason score is 4+4 and I have a T-2 tumor. Not sure what that means, but have been looking up on the computer. Will see the doctor for more information, have a bone scan scheduled before seeing the doctor.

Haven't told my wife yet, she is not able to understand due to a closed head injury. I have told her care giver, and a couple of friends plus my sisters. Big worry is if something happens who will take care of my wife since she is unable to take care of herself, that is what worries me the most.

Reading about how others are doing and taking some relief at all the help that everyone is giving. Still it is a big worry about what the outcome will be.

Dave

gcapaz
Posts: 4
Joined: Oct 2008

My experience exactly, I'm also 58 and had the same surgey 6 months ago and am doing great. My first PSA after surgery came in at .05, which my doctor said was great. I have another in late June. As you stated the robot is inpressive to see, thank god I was out like a light. I was also luck that my insurance covered the DiVinci and at the time I didn't even know that my doctor was considered one of the best in Florida. Good luck to all, my prayers are with you. George

RRMCJIM's picture
RRMCJIM
Posts: 149
Joined: Mar 2009

Welcome to the right place, sorry you have to be here. We have some great results relayed in the threads here. Theo is the poster boy, I pray I can challenge him for the title soon. I will have my time with Di Vinci Friday next, the 22nd. Look out Theo, I'm looking for the crown...lol... Now if only this stu__d Bit_h at work would keep her damn paperwork to herself. They hired a HR lady, she thinks she is working for IBM,or someplace with 10000 employes. I keep telling her we only have 60 people here. Small dealership, the owner walks around. She is stressing me out with her damn paperwork. I finally told our GM to keep her away from me. I am trying to comply, but also getting ready for my surgery. I think after 37 years with Harley Davidson, I am trying to do the best for all of us.

Paraplu
Posts: 37
Joined: Feb 2009

Jim, all the best with your surgery and yes I hope you can beat my success, I hope everyone will be doing as well as I am.

It's been 2 weeks since the catheter was removed. Incontinence was a bit of a shock to the system that I am still dealing with. The irrelevant number of pads a day I'm being asked, is irrelevant because as a frequent hiker / walker I just can't stop the flow. Great when I'm asleep and great when doing office work and close to a bathroom, an issue when walking for more than 2 miles.

Anyway, the surgery was a nit, the catheter was no problem at all, removing it was weard to say the least but very manageable, now erections are not as firm as I like them to be but they are there and the incontinence .... kegel, kegel, kegel.

ALL THE BEST

Paul_S
Posts: 10
Joined: Nov 2009

Hi Theo,

I've read your many other posts. Congratulations on your excellent recovery and prognosis. I've got similar PC stats as yours were and have decided to do surgery like yours. I can't find Dr. Martinez in the Nor Cal Kaiser directory. Can you please give me his first name?

Thank you!

Paul

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